Waiting for a diagnosis - FAQs and what to expect

Patient Guide

Waiting for a diagnosis – FAQs and what to expect

If you have a mole that’s changed, or an abnormal area of skin, and been to see your GP, you may be referred to a specialist centre. We’ve put together some frequently asked questions (FAQs) and information to help you know what to expect below.

FAQs - What to expect

Jump to (or scroll) to see the following sections below

Q: What is a 2WW? (Two week wait)

A: If your GP has some concern you may have melanoma, you are referred for an urgent review appointment that usually takes 2 weeks to come through. This is known as a 2WW.

Q: Why will I need a full skin examination?

A: This usually happens on your referral appointment. It is necessary for the medical team to examine any changes or unusual looking areas found in all of your skin, as well as the original area you were referred for.

Q: What other tests/investigations may happen when I am referred?

A:  For most patients, this will include a type of small skin biopsy known as a local excision. A small area of the suspect region of skin is removed by minor surgery to be examined further.  

You may be later offered further investigations that apply to you as an individual. These could include a sentinel lymph node biopsy, wide local excision and occasionally scans. A test for mutation in a gene known as BRAF may also be carried out (see below for more detail). Note that there are no blood tests to diagnose melanoma. Tests for MRSA and Covid are also given to individuals entering a hospital setting.

Q: Will I need scans? 

A: Your team will advise if scans are needed depending on the results of your biopsy.  The majority of people don’t require imaging or a scan. See below for more information on types of scans.

Q: What is a SSMDT, or MDT meeting and who attends it?

A: SSMDT stands for Skin Specialist Multidisciplinary team and MDT for multi-disciplinary team (MDT). This is a team of expert health care professionals  from different specialties who work together to decide the best plan of care for you. 

Q: Why may my tests take some time to come back? 

A: It is can be very hard and worrying time to wait for test results and your team recognise this. Average wait times can be 2, 3 or 4 weeks depending on the test. It is a good idea to ask how long your results will take. For skin biopsies it takes time to process a skin sample. You can contact your clinical nurse specialist if you have any concerns.  

Q: Where do I find the NICE guidelines for treating melanoma? 

A:  NICE guidelines for melanoma are the pathways of care doctors diagnosing and treating you follow. They can be found via this link: https://www.nice.org.uk/guidance/ng14

Q: Is melanoma hereditary?

A: Most melanoma cancers do not run in families,and are not hereditary (inherited through genes). Since families may inherit the same skin type though, they may have more risk of melanoma for this reason.

Q: Why is BRAF tested?

A: Approximately half of melanomas have developed a mutation in a gene known as ‘BRAF.’ This means your melanoma contains a faulty BRAF protein. A test can be carried out on your melanoma to determine if has a faulty BRAF also known as being BRAF-mutant or BRAF-Positive. This may affect your treatment choices in the future.  If your melanoma does not have the BRAF mutation,this is called being BRAF-negative or BRAF-Wildtype. BRAF mutations don’t run in families, they are not hereditary and therefore it is not something you pass on to your children. For more information on BRAF watch this video.

Q: What does it mean if I have been told I have melanoma in-situ or lentigo maligna?

A: This is not a cancer. You don’t have an invasive melanoma. This type of disease is considered a pre-cancer that is sitting on the surface of the skin. This guide has been designed specifically for patients with invasive melanoma. For more information on melanoma in-situ, CRUK provides more information here.

What to expect in detail

Seeing your GP                              

If you are concerned you may have a melanoma, please contact your GP in the first instance. It may be that you will be offered a telephone consultation. If you can, it is worth taking a photograph of the mole or area.

If you see your GP with a mole that’s changed or an abnormal area of skin they will assess if there have been particular changes like size, shape, colour or signs of irritation (oozing and bleeding).

 If they think you need a referral or suspect melanoma they will:

  • Refer you to a specialist clinic

Or

  • They may take a photograph of the affected skin and send it to a teledermatology clinic. Here a skin specialist doctor (dermatologist) looks at the digital picture

If they dont think you need a referral they might:

Ask you to come back in a couple of weeks or months so they can monitor your mole or abnormal area of skin. If you notice any changes make an appointment with your GP straight away.

Referral – what to expect next

If you need a referral, you may be referred for what is known as a ‘two week wait’ (2WW) for an urgent review. This is the amount of time that should pass before you get seen in a specialist centre.

We’ve put together some information about what to expect next.

Where will I be referred?

You will be referred to a specialist. On your first appointment, before melanoma has been diagnosed, you will most likely see a dermatologist and may speak to a melanoma cancer nurse specialist (CNS) at this centre.

What can I expect on my first appointment? 

Upon referral you will normally have a full skin examination by a member of the medical team. Here, all of your skin is examined from the top of your scalp to the soles of your feet to look for any changes or unusual looking areas. They use a magnifying instrument called a dermatoscope. Clinical photographs may be offered to help with future follow-up. Sometimes, they may also examine your lymph nodes to check for swelling.

Any lesions that look suspicious will be removed by a minor surgery by what is known as a ‘local excision.’ This is a relatively small procedure and a local anaesthetic is given. This tissue or ‘skin biopsy’ is sent to be examined under a microscope by a pathologist. They look at the cells and tissue in detail (histology). 

Useful to know:

  • You should be given an idea of how long the test results will take to come back. If not you can ask the doctor.  They can take up to four weeks in some cases. It can be frustrating to wait, but processing and preparing the sample takes time. There may also be more than one pathologist that needs to look at it.
  • When you attend this appointment consider wearing loose fitting clothing which you can remove easily in order to make the examination easier. They may ask that you be fully undressed and in a hospital gown.
  • If you have any questions you can ask your assigned melanoma cancer nurse specialist. Everyone is entitled to a cancer nurse specialist or key worker who can act on your behalf. 

What can I expect next if I am diagnosed with melanoma?

When you receive the diagnosis of melanoma, you may experience a number of emotions. These can include shock, fear, uncertainty, anxiety, anger. You may also have many questions that need answering. 

Your case will be referred to a multi-disciplinary team (MDT) or Skin Specialist Multidisciplinary team (SSMDT). This is a team of expert health care professionals from different specialities who work together to decide the best plan of care for you. 

>For more information see our page on ‘who will be involved in my care?’

It is likely that at the time of diagnosis you will also be introduced to a specialist melanoma cancer nurse. This is a nurse who is able to provide advice and information related to skin cancer. The specialist nurse is there to answer any questions you may have and we would encourage you to share any of your concerns with them as they will help you through what is a very difficult time. If you do not meet the nurse specialist at the time, we would encourage you to ask your consultant for their contact details. You should also be able to contact them by calling the hospital switchboard number and asking for the dermatology or skin cancer nurse specialist. They may not be able to take your call straight away and many teams will have an email system or answering machine where you can leave your details.

You may also meet a member of the medical team to discuss what is known about your melanoma at this point.

They may include information on:

  • Breslow thickness – that describes the depth of your melanoma and is usually measured in millimetres
  • Whether the melanoma has been removed with the initial biopsy
  • Ulceration – whether your melanoma is ulcerated as this can affect your chances of further problems

Your doctor will be happy to discuss these features with you so feel free to ask during the consultation.

What guidelines do doctors use to treat melanoma?

Doctors diagnosing and treating melanoma follow pathways.

These can be different in different parts of the UK. They are also helpful for patients and carers and can be found via these links:

England and Wales: 

National Institute of Health and Care Excellence pathways 

Northern Ireland: 

Many of the melanoma NICE melanoma pathways are endorsed by Northern Ireland.

Scotland: 

Scottish Intercollegiate Guidelines Network (SIGN) pathways 

Further possible treatments and investigations:

Depending on the stage of the original (primary) melanoma, you will be referred on to other doctors for further treatment and/or investigations. You may not undergo all of these but your team will decide what is needed in your case.

  • Wide local excision

>See more about wide local excision

  • Sentinel lymph node biopsy (SLNB)

>See more about sentinel lymph node biopsy (SLNB)

  • BRAF mutation testing

>View targeted therapies video with an explanation on BRAF testing

  • Radiological imaging scans

Depending on the type and stage of melanoma your doctor may require that you have imaging scans. This is to see if your cancer has spread to lymph nodes or other organs. Note that this is not needed for most people. It is more common in later stages of melanoma (Stage 3 or 4), or if you have been diagnosed with a rare type of melanoma. Here are possible types of scans you may undergo:

Ultrasound –This type of scan uses a hand held probe that uses high frequency sound waves and computer analysis to look at organs inside your body.

CT scan (computerised tomography) – This type of scan combines an X-ray and computer analysis to build a detailed image inside your body. It is sometimes also referred to as a CAT scan. You usually have to lie on a flat bed that passes through a large circular ring. 

MRI scan (magnetic resonance imaging) – This type of scan uses magnetic fields to build a detailed image of your body. An MRI scanner is a large tube that contains powerful magnets. You lie inside the tube during the scan and need to keep as still as possible.

PET scan (positron emission tomography) – This type of scan involves using a radiotracer that is injected into the arm and whose presence is detected in a scanner. This scan is often combined with CT scans to produce even more detailed images. This is known as a PET-CT scan.

Useful to know:

  • Note that before a scan you may be asked to remove clothing and dress in a gown
  • You will also need to remove any jewellery or anything metal
  • After a scan is performed it is sent to a doctor who specialises in scans and x-rays, called a radiologist. They will interpret the results and send them to your consultant
  • Scans are interpreted by specialist radiologists and this may take some time